Category Archive

Even though DNR (Do Not Resuscitate) bracelets have been available in the U.S. for years, I have a feeling there will always be controversy surrounding whether a patient can/should refuse critical care. Especially in cases of unforeseen emergency. Imaginative methods of preventing heroic lifesaving measures will continue to challenge the law until we can come up with a foolproof system everyone is comfortable with. But since attitudes towards what would constitute compassionate treatment differ wildly when it comes to extreme paralysis, coma, or chronic pain, I hold little hope we’ll reach an agreement in my lifetime. Ask any Ambulance Driver and they will tell you even the study of resuscitation is an inexact science that requires a patient’s ignorance:

“We will never know the best way to treat people unless we do this research. And the only way we can do this research, since the person is unconscious, is without consent,” said Myron L. Weisfeldt of the Johns Hopkins University School of Medicine, who is overseeing the project. “Even if there are family members present, they know their loved one is dying. The ambulance is there. The sirens are going off. You can’t possibly imagine gaining a meaningful informed consent from someone under those circumstances.”

Which means depending on where you live, it really may not matter if you carry a card, have a tattoo or sign a Medical Directive since the rule for an EMT based on protocol is resuscitate first, ask questions later. This is also why DNR’s are usually reserved for patients with terminal illnesses who wish to die without invasive medical procedures rather than for people experiencing heart trauma or other medical emergencies. Ultimately (and frustratingly for some of us) it seems the only fail-proof (?) method is trusting your eventual caregivers to know your desires and be strong enough emotionally to fight for your rights, if it ever comes to that. (via BoingBoing)

UPDATE: In a related story, the Washington Post reports on a New York Ambulance service for recovering your organs if EMTs can’t save you. While organ donation is desperately needed, of course it makes people suspicious: “I think it’s disgusting,” said Michael A. Grodin, director of bioethics at Boston University. “People are going to worry when the ambulance comes out to their house whether they are there to care for them or to take their organs.”

From a BBC news article, “I think that there is a huge role for philosophical reflection as a way of changing our attitude towards events over which we have no control…We have to learn to make sense of a finite life.” Philosopher Havi Carel uses the tools she understands best to place a personal perspective on her own terminal illness. She is working on a book due out in the fall titled Illness (The Art of Living). I’m sure it will contain reflections similar to the one’s she mentions in the longer article of last March from The Independent,

“Illness breaks down the neutrality and transparency of our bodily existence. But it has also given me perspicuity. I observe my life and the lives of others and see them for what they are: brief, full of emotion and agony, activity and joy. I see people arguing over nothing, worrying about wrinkles and careers. Illness makes you immune to that. From the loneliness into which my illness forced me, I became able to see the world anew.”

Her’s is a different way to view illness: as an emotional world that can incorporate well-being and the possibility that you can be ill and still happy. It is an unexpected hypothesis and one that depends on a different and more creative approach and attitude than most of us are used to, or maybe more than we are even comfortable with. After all, no one says they’re sick or terminally ill with a smile. Or do they? Which is why this a useful bit of mind-bending.

To be sure Dr. Carel has creativity to spare. On doing a bit of further research I found an article she authored (from SCAN, The Journal of Media Art and Culture) that appears to draw from similar themes only in a very off-beat and fascinating way, with a really terrific bibliography at the end. I won’t reveal too much about it since you only have to read the first paragraph of the link to see where she takes the essay, but I will say it involves illness as a metaphor to one of the most horrific monster movies of all time. The one that completely freaked me out when I was a kid and to this day I can’t bring myself to ever watch again. To draw such parallels you certainly do need to be an out-of-the-box thinker. (Thanks to Chris at Crooked Timber for the heads-up).

Although it has a bland headline, this article from the NYTimes is so much more important and interesting than that other story grabbing attention about the guy who bought a coffin branded as a can of PBR beer (you can search for it but I won’t bother).

I find this idea of “slow medicine” compelling because I’m familiar with similarly named movements, like slow food, and slow leadership. Such labels are more honestly about simply increasing personal awareness of your environment and those conscious decisions we each make about how to best operate within that environment. They also all seem to echo the meditative principles of the Eightfold Path where the wisdom and ethics of alleviating suffering are really about doing the right thing.

I think the conflict we feel when it comes to end of life care relates to the values we project onto others–the choices we would make for ourselves in similar situations, which might not be the best choice for another. For example I remember my brother, in emotional distress, telling me we had to do everything possible to “save” our father, “to give him a fighting chance.” Dad was at that moment in and out of consciousness, breathing artificially, in an ICU due to a virulent strain of pneumonia. Since he couldn’t be consulted (and I only suspected what he’d want based on my own prejudice) what was I to do? Play the angel of death? I asked my brother to what end would we be keeping him alive? He had suffered several strokes and was blind in one eye. He had been nearly deaf for years and to add insult to injury he suffered from dementia associated with Alzheimer’s. How heroic should we tell the doctors and nurses to be? In hindsight I understand and still remember my brother’s panic. Doing anything at all seemed better than the waiting and helplessness of a bedside vigil. He was angry with me and lashed out by saying he wouldn’t want to be under my care because I’d probably pull the plug the first chance I had. It was a difficult situation and hard to hear. Just like this list from the CDC on who gets lifesaving care in a pandemic is a difficult one to read.

As the doctor in the article states, our love of life has predisposed us to aggressive care. I don’t believe the real question is even about cost or risk. It requires we ask when our honor, dignity and humanity requires that while we may not welcome it, we allow death to take its course because it is the right path. And the right answer will often be hard to accept, making the right choice life-changing.

Last year Randy Paush and his 70-minute talk, now known as “The Last Lecture” become extremely popular. Now it has become an inspirational book containing “ideas for achieving one’s childhood dreams” which has spawned a “…contest seeking examples of great parental advice either dispensed or received.” I have mixed feelings about this.

I’ve read that Paush was astonished at his sudden notoriety and only cared about “…the first three copies of the book.” One of his friends said, “Randy never, ever had any expectation that his lecture would turn into the phenomenon that it has become. The main reason it was taped at all was so that his children, especially his younger two, would know something about him.” At around the 55 minute mark (where it deepens into something more than a professional resume) he shares his success depended on the blessings he was born with and talks about the wisdom imparted by those closest to him. A contest doesn’t quite mirror the intent.

Whether Paush (or hundreds of comments) inspires you or makes you cringe shouldn’t matter. Leaving something personal after death is very common. We all have something intimate to pass along. What should matter is that we be encouraged to do so regardless of children. While wisdom isn’t the strict purview of the dying, or even the old, those groups do tend to have a sharper focus on the essential. And despite Paush’s claim that the “headfake” of the lecture was that it wasn’t intended for the audience, his reflections enlightened everyone who saw it. I wish the Times had used the opportunity to promote ethical wills to their readership (which I’ve mentioned before). I realize all the hype over social media encourages us to feel like everyone must want to read our pearls of wisdom (honestly, they don’t). But unlike blog posts your “final love letter” isn’t addressed to the world. It is written to a few very specific people who mean the most.

There are already 324 comments (and counting) of people sharing their advice with strangers on a web page that will soon enough go dark without benefit to anyone. Whereas if they’d taken the same trouble to write these thoughts in a letter, included a photo or two, and put it in a safe place (–even reviewing it once in a while), it might just survive long enough to make a deeper impression. Much more valuable than a fleeting contest with a questionable prize. As much as I hate to admit it, I understand why people would rather leave a public comment than write a personal letter.

“Thinking back, I wish I’d hugged her close or held her hand. But neither of us had ever been physically demonstrative with the other, and while much has been said and written about how people transcend their pettier sides in crises, in my experience, at least, what actually happens is that more often we reveal what lies beneath the waterline of what we essentially are.”

In his book David Rieff writes about his mother, Susan Sontag, and her struggle with cancer. She died around the same time as my own mother, with mine being only a few years older. David voices some of the same “unanswerable questions of a survivor” that in hindsight plagued my ability to talk openly with my own mother about her failing health and the forced cheerfulness, or in my case ignorance, of the gravity of her diagnosis. And while my mother was not a famous writer, I can say without hesitation she loved life equally as much in her own way, whereas my feelings tend to drift towards the “…eighteenth-century French writer who wrote a friend asking “why, hating life as I do, do I fear death so much?” That was Larkin’s perspective, too. It was even Canetti’s when he wrote, “One should not confuse the craving for life with endorsement of it.” Regardless of a personal perspective on death, Rieff puts the difficulty of consoling another facing it into sharp focus, and everyone who has confronted similar situations will be left nodding their heads. He talks of the things he felt he should have seen, the do-overs if given the chance. He examines them without the overly sentimental perspective one would expect from a child who has lost a parent. They are simply those unanswerable questions we are each left with in the end, “Did I do the right thing? Could I have done more? Or proposed an alternative? Or been more supportive? Or forced the issue of death to the fore? Or concealed it better?” and there is no predicting them. Listening to him talkabout what he wanted from her and what he felt she wanted in her own death is an interesting reflection on death and his mother’s struggle to deny it purchase.

A neighbor of mine died last Friday from a heart attack. When I asked his wife if they’d discussed his burial wishes she said no, they felt if they never discussed it, it wouldn’t happen. This is despite the fact he had a medical history of heart disease. Of course she knew death happens whether you discuss it or not, but I was shocked they had never discussed it in their 48 years of marriage. Luckily her children will help her muddle through the details of the coming months. Not everyone chooses to prepare for death regardless of the odds.Some people just don’t feel it’s necessary, after all, they won’t be around and people do have a way of adapting. But I thought bringing up the topic of odds might be useful for perspective. Here is an excerpt from a 2005 article titled conveniently, The Odds of Dying. I’m sure the insurance industry uses figures similar to these as well. It’s also interesting to note that although we aren’t all high rolling gamblers, we are often more afraid of dying from remote causes rather than the more mundane and obvious. Just another method of denial perhaps.

(UPDATE: Just spotted this PSA from the American Lung Association titled “Odds” as a warning against starting smoking. They contrast the chance of getting lung cancer with getting hit by a car–a visually dramatic comparison of 1 in 7 compared to 1 in 100).

The more specific figures are based on 2001, the most recent year for which complete data are available. Other odds, indicated with an asterisk (*) are based on long-term data.

All figures below are for U.S. residents. (personal note, I sure wish WordPress made making tables easier)

Now that sounds like quite a job title. Please someone, offer me this job? Not many people would find it as fascinating as I do–but if (the historical predecessor to Jon Stewart and the Daily Show) Ned Sherrin enjoyed it, you might say such work has more entertainment and enlightenment value than appears at first blush. In fact one of the many tributes to him said, “…Sherrin has in recent years also been memorial services correspondent of the Oldie magazine, because it was said he went to them all anyway. And in his autobiography published in 2005, Ned Sherrin, the Autobiography, he makes it clear he will continue to attend the memorial services of others until it is his turn.” He would attend funerals not just to write an obit, but to comment on them as a theater critic might review a play.

At the same time he gathered an anthology titled Remembrance: An Anthology of Readings, Prayers and Music Chosen for Memorial Services with proceeds to benefit an English hospice organization. Again ahead of his time, he believed everyone wanted to personalize (or orchestrate) their own memorial in some way rather than rely on what others might say. Strangely nowhere is described how his own funeral was performed. As an actor and writer I’d be surprised if he didn’t at least have a parting shot for his friends and fans. After all, isn’t a memorial a type of theatrical event? It’s a pity that not only is the above-referenced title out of print, but equally disappointing is I can find no record online of even one of his funeral review columns from the Oldie. Seems like although his life’s work is fondly remembered, the work itself has dropped into a black hole. (And yes, that is a pun.)

All that’s left to do now is let that job title segue nicely into “RIPtv” as yet another fascinating idea whose time is still yet to come? I’m almost shocked that some producer hasn’t at least tried to cash in on this yet. [Thanks to Alana at obituaryforum.com]

It has been difficult to write this last month because my closest companion passed away on August 31 and I really haven’t known how to write about it. I still don’t. I knew he would never live as long as me, and that his broken heart would actually kill him sooner than the average life expectancy for his kind. But I think because I loved and cared for him so fervently he managed to hold on for me a few years longer than predicted. I know deep down I should be grateful for that extra time instead of mourning the fact that I didn’t have more. But that is inevitable isn’t it? Which brings me to Kevin Kelly’s discussion of Life Time, and how important it is to recognize how much we have left, with tools and predictions to help you count your own numbered days down. It’s all very fascinating and even a bit puzzling, as if a daily reminder of your eventual death to will keep you hopping about, motivated and ultimately anxious about those (lost) minutes ticking by. (Apparently I am going to die on Tuesday, July 22, 2042 but to me those kinds of predictions are really no more reliable than my horoscope.) Regardless, I think the point is you really never have enough no matter what the prediction or number is. I never held jcee in my lap enough. I never told my mother I loved her enough. I never took the time to ask my father about his life until it was too late and he could no longer remember it. Last Sunday I stumbled upon Garrison Keillor’s monologue, News From Lake Wobegon, on the radio. It was beautiful and worth listening to….he talked about how fall and the golden days of September remind us how we always hope there will be more….how all good things come to an end and how it is the end, the knowledge of death, that makes life so unbearably, heartbreakingly beautiful. Put it on your podcast list for listening during these fall afternoons. The poetry of it I think much better than clockwatching…

Yesterday I took a trip to the tiny vine town Graton for the gallery opening of Art Honors Life and to meet Maureen Lomasney in person. The NYT called it “the nation’s first art gallery dedicated to cremation urns and other personal memorial art” and I’ve had it marked on my calendar for months. I first mentioned Funeria when I learned about Nadine Jarvis’ work last March so the anticipation was worth the nearly three hour drive from home. Especially when Maureen showed me a little handcrafted art book she’d created years earlier to capture personal histories. When I saw it I felt a little like I’d found a soul mate. The urns of course were all gorgeous. You can see a few examples in the (pdf) portfolio here, but we also talked briefly about those kinds of art that children or teens might want and how they would differ from what was being displayed that evening, as well as burial options besides cremation and how odd it is that we care so much for the purity of things we put inside our bodies until our deaths, when they are then artificially preserved by being pumped full of chemicals.

It was also nice to talk so openly with some of the other visitors. I met a fascinating woman who builds custom coffins on special order (I found a reference to her handcrafted simple pine box caskets based in Forestville, but that is a guess since her business is not online and I seem to have misplaced the materials she provided me when I was hurriedly noting some resources she shared—sorry Kate!). She told me a wonderful personal story about how she placed some of the ashes of her mother in an old fashioned pressure cooker because her mother loved that kitchen tool, they were sturdy and airtight, and her mother had given her one as a wedding gift long ago. I had to laugh at that because it was so sentimental and perfect and so different from what we formally think of as traditional even in the light of so many beautiful urns placed in the gallery around us.

She gave me a few more tips that I am so thankful for and I want to share here as well. First is the Funeral Consumers Alliance “protecting a consumer’s right to choose a meaningful, dignified,affordable funeral” where you can find information on home-funerals and the exceptions in a few states to avoid using a mortuary completely. Second was the tip about the non-profit organization called Final Passages where Jerrigrace Lyons, founder of the project directs a Home Funeral Ministry by providing courses, pamphlets, and information packets to anyone interested in the legalities and benefits of family directed funerals. It was a wonderful evening full of great conversations. Best wishes to Maureen who hasn’t just caught the latest green trend, but has been quietly waiting in the wings for years hoping society would eventually catch up with her vision that both life and death are honored when industry is not allowed to interfere with the more deeply personal creative urge that exists in each of us.

Just when I start feeling a little guilty about not posting more frequently, a tiny bit of rain falls. Today the Nonist reappeared after a long drought with a metaphor to share in the form of the Resurrection Plant (also called the Rose of the Virgin or Rose of Jericho). I love Nonist’s site. It has been around a long time in internet years, but rather than worrying about posting on any set time schedule there only are posts that are meant to be there. Each one is a gem and today’s is no different. In turn this has made me feel better. Roses of Jericho do what they are meant to, when they are provided the opportunity, no more, no less. This little plant has been around hundreds of years and survives because it has learned to adapt to lean times. But like the nonist, sometimes I do wish anxiously for rain.

(UPDATE: Oh, and that reminds me. Here is something I’ve been saving that is related to that. These two things work together nicely I think).

Bob Thurman became a Tibetan monk at age 24. I was surprised to learn he was the first American and Buddhist scholar to be ordained by the Dalai Lama. In his Ted Talk, (filmed in 2006 and posted just recently) Thurman has some great things to say about self awareness despite couching it in terms of technology which I suppose is due to the nature of the venue. But he really gets rolling around the six minute mark. It struck me because I’ve always considered how heartbreaking it is to be compassionate if it means taking on another person’s pain. He explains this paradox of how embracing someone else’s pain actually makes us see ourselves differently. And most remarkably, the way to help those who suffer is by having a good time. You have to listen to him to really make sense of this, but in part the key to compassion is that it is more fun (and by this I think he means rewarding) than focusing on only yourself. He asks, what is our brain for if not for compassion? What is it for indeed…not to worry about how we achieve our own happiness in this lifetime, but contributing daily to the happiness of another is our brain’s greatest gift. So to heck with all that worry about my next paycheck, who will I make happy today?!

You may remember I’ve mentioned my cat here before. And I’ve also written about my artistic interest in funerary urns. Well this past weekend I just brought home what will be the future urn for my cat’s ashes thanks to Py Simpson and Arturo at the Phoenix Gallery. It is titled (very appropriately I think), “Some Kitties Can Fly” and was part of a show memorializing the many pets who died from the food poisoning recall earlier this year. So far the cat doesn’t seem to care much. But looking at it now makes me smile, and I know I will cherish it forever. Preparing isn’t very hard to do if your heart is in the right spot. Now it’s time to start saving my pennies for my own container…

More useful information just came across my radar from CC which is worth preserving here. It’s about the process involved in opening a deceased person’s gmail account but I’m sure a similar procedure exists in just about any online service. Obviously it would just be easier on your poor family if you wrote out a list of contacts in case of death rather than forcing them to look through your dirty laundry? And for those who keep EVERY email you have ever received, perhaps you really don’t want to be archiving all that stuff after all, eh? Especially given the levels of privacy being invaded every day by frightening exciting new Google inventions.

Hi all,

Here is our formal request for information concerning access to a deceased person’s Gmail account. It should provide all the information you will need to proceed with contacting us for access.

If an individual has passed away and you need access to the content of his or her Gmail account, please fax or mail us the following information:

1. Your full name and contact information, including a verifiable email address.

2. The Gmail address of the individual who passed away.

3a. The full header from an email message that you have received at your verifiable email address, from the Gmail account in question. (To obtain the header from a message in Gmail, open the message, click ‘More options,’ then click ‘Show original.’ Copy everything from ‘Delivered- To:’ through the ‘References:’ line. To obtain headers from other webmail or email providers, please refer to http://www.spamcop.com/help_with_headers/)

3b. The entire contents of the message.

4. A copy of the death certificate of the deceased.

5. A copy of the document that gives you Power of Attorney over the Gmail account.

6. If you are the parent of the individual, please send us a copy of the Birth Certificate if the Gmail account owner was under the age of 18. In this case, Power of Attorney is not required.

After we’ve received the above information, we’ll need 30 days to process and validate the documents that you’ve provided. If you need access to the account sooner, in accordance with state and federal law, it is Google’s policy to only provide information pursuant to a valid third party court order or other appropriate legal process.

Yes, I’ve seen this site (“Your global resource for MySpace.com member obituaries”) that, most recently anyway, capitalizes on the deaths of the Virginia Tech students. But don’t do what I did and avoid clicking the associated creepy advertisement for “dead kidspace.” I certainly wonder how such web businesses maintain credibility when ads for myspace knockoffs that feature profiles of sex offenders or sophomoric animated banners occupy the same screen real estate as what should be serious content. And I suppose there have been some thoughtful observations on the phenomenon (well, reflective until the last line anyway) from people who seem a little surprised that someone’s writing or image might survive their physical existence, or that people might think of a friend or family member long after their death. Perhaps the public needs a type of internet séance fantasy for the same reason they are entranced by those popular/ist “ghost shows” on tv?

Yet what really puzzles me, as someone who is also interested in history, is that sites like these (and there are many) are built to provide only a temporary limbo for such memories. None of these services have the committed attitude to long-term thinking that most cemeteries must consider, and the fact that most are subject to server glitches implies to me that little deep commitment goes into them beyond the sensationalism of the moment or the desire to capitalize on grief. Which is unfortunate because it reduces such efforts to a fad rather than a truly meaningful archive of memories. The whole “pay to remember” scheme reminds me a little of those old fashioned fortune telling machines where you drop in a quarter and the puppet behind the glass exchanges you a fortune. Sure it’s a quaint bus stop but certainly not a place that encourages contemplative thinking beyond a narcissistic donation of opinion. And besides, it’s only a matter of time before someone removes the machine and carts it off to the next state fair. There is a reason graves and physical memorial sites are lovingly tended by future generations. There is a numinous response inherent in touching something outside your normal experience that doesn’t mimic the robotic exercise of routine existence. I look forward to the day technology can capture a small sense of that mystery, honor it without advertising, and promise your family’s “page” will be there for at least your grandchildren to read. That would be a service worth creating an endowment for. (Thanks Paulina/Dennis)

I live in a neighborhood where there are a higher than what would be considered normal number of ambulance visits because this area has a very high density number of retired seniors. I jokingly call it Seizure City which I guess isn’t a very nice thing to say, but after hearing the fifth siren in as many nights you have to find some sort of way to deal with it, and a sense of humor helps. I really admire emergency response workers though. Their patience and calm under duress matched with their people skills make the best ones seem almost super human. And here is one, a guy named Tom with a blog called Random Acts of Reality. He is a writer and an EMT in London and the stories he tells are simply amazing and often touching. People like him restore my hope in the future of humanity even though the curmudgeon in me suspects he’s one in a zillion. I’ve put his book on my list of things to read as it might come in handy the next time I need to call an ambulance. (Thanks once again to Cynical-C for the link.)

I was talking with a friend about what triggers people to plan for their eventual death and it seems the biggest reason is age. People automatically assume death is for the old when of course that’s really not the case. Here is a story covered by CNN about Miles Levin who is a teenager dying of cancer. For a news article it is sensitively done, although I tend not to consider this kind of event hard news so I temper the sensationalism of the story a bit for my own benefit. There is a comment from the CNN video that says Miles “has little time to make life matter” but in the grand sense we are all held to similar limitations, only he knows when his time will end and most of us do not. Of course I’m not immune to the fact that as a teenager he has not had the chances to experience as much of life as his elders have and that is what makes his observations especially poignant. That he uses his disease as an opportunity to comfort others is what makes him an exceptional human. I wonder what will happen to his blog after he dies? No one seems to be asking that. (Thanks to Epicenter for the link)

Most insurance companies and bereavement counselors will give you checklists to follow in case of an emergency or after a family member has died. Of course it’s often at such times when the brain shuts down and its hardest to search for the important information even if you want or need something to keep you busy and your mind occupied. Making your own list before hand is hard too. There are just so many other things that get in the way. But when and if the opportunity appears, here are ten items to write down the answers to during the next conversation you have with your parents. (Thanks to Dumb Little Man for the foresight).

I would add though, they don’t have to be just for your folks, but your spouse or siblings or even that friend who may have no family at all. There are other things too I think could be added to this list. For instance,

11. Who on their list of personal friends and contacts would they like to have notified? (I still occasionally get letters from old friends wondering what happened to my parents but I had no idea who they were or how they knew one another). 12. Did they have a habit of hiding emergency funds or personal items around the house and where would be likely places to look? (My mother hid money in the back of her medicine cabinet. When I scolded her about this she just grinned at me and told me it was the safest place she could think of. It certainly was. The house would’ve been sold before I knew to remove that cabinet from the wall.)13. Whether or not they have a hospital emergency kit packed and what should be included in it. You don’t want to be rushing back and forth during a crises to search for the rosary or the nail clippers.14. Find a hospice or a care worker you and your parents can talk to before an emergency occurs. Only these folks can guide you through the mine field that is palliative care with compassion and understanding. But if contacted at a moment of crises there is no chance for a partnership to be created and it will be just another confusing voice to listen to at a time when one calm adviser will be the thing you most desperately wish for.